Review of Organ Donation
Submission
Andy Tookey
GiveLife NZ
www.givelife.org.nz
021 027 54677

Introduction

I have met with the review team a few times and we have discussed a wide range of
issues regarding organ donation.

In this submission I want to focus mostly on the topic of an organ donor register.

Submission

Even though the review team had done extensive work looking into an organ donor register, on the day that the review opened to public submissions the Minister of Health was reported in the media as saying:

“A standalone register is off the table.” And, “weight of evidence had shifted away
from a stand alone register.”

Why he would say this option is off the table before taking in any submissions from the public seem slightly bewildering.

I have concerns that if a register is not included in the final outcome then the system will still continue to fail.

Firstly on the Minister’s quote that: “weight of evidence had shifted away from a stand alone register.”

In 2006 I co-wrote a proposed law change with Jackie Blue MP that would establish a binding organ donor register.

In Parliament Jonathan Coleman had this to say on it:

“The Ministry of Health said that there was no evidence. Well, we heard that several jurisdictions around the world are already instituting this type of donor register. If it is good enough for the Canadians, for places in America, and for states in Australia, then one would have to wonder why we are not doing this in New Zealand.”

What he said then still applies today. Since he said that in 2007 there still have been more and more countries/US States implementing registers. Why would they be doing that if there was no evidence?

Surely they have done their own homework and have still decided to go ahead with a register.

Even if he was correct in that there is no evidence that registers improve the organ donor rate there are other things to consider.

For example there is no evidence that giving more money to the organ donor service will improve the organ donor rate. There is no evidence that a public awareness campaign will improve the organ donor rate and so on.

The point is that no one singular action will improve the organ donor rate but when all these items are implemented together it will improve the rate.

The register is an important part of the jigsaw puzzle that I feel if left out will undermine other areas.

Previously the Health Select Committee has recommended twice that an organ donor register be established. They did this after hearing arguments for and against a register.

Further quotes in Parliament from Jonathan Coleman include:

“The problem we have at the moment is that if we register on our driver’s licence as an organ donor, there is absolutely no guarantee that someone will not overrule that wish once we have passed on. The National Party position is that if one makes a decision about what will happen to one’s body after one dies, then that should be absolutely binding and no one else should be able to overrule that decision.”

And…

“but I listened with interest to the arguments saying that we cannot establish an organ donor register because there is no evidence that it will be effective. The very people who are making that argument will want to regulate through the Public Health Bill for fairly Draconian measures for which there is no evidence either.”

Dr. Coleman is welcome to change his views now, but I actually think they are still valid today.

There is no evidence that putting sticking plasters on the current driving licence system will improve the organ donor rate, but I believe that is one of the proposals put forward.

One piece of research conducted by Scarlett Storr from the MOH Review Team seems to back up that registers can be effective, or in the very least helpful in the overall scheme of things.

In the graph that Ms Storr produced, it showed that in Australia if a person was known to be a registered donor then the consent rate was 93%
At the other end of the scale where families were not aware of potential donors’wishes the consent rate was only 46%

That 46% is similar to New Zealand’s current rate.
Would we be able to gain a 93% rate if we had a register recording donors’ wishes?

It would seem pointless to spend a lot of money in the medical setting if down the chain 6 out of 10 families still continue to say no to donation. A lot of money could be spent on identifying more donors in ICU’s but we would make no gain due to the
continuing practice of 60% of families saying no.

We know from the graph produced by Scarlett that only 7% would object instead of the current 60%.

This seems to be a key area in favour of a consent register as part of an overall revamp of the system.

The Drivers Licence

I do not think revamping the driving licence system will work.

The first and most obvious question is: How will non drivers register?

There are multiple problems with the current driving licence being used as a donor database. You may be able to mitigate some problems such as giving easier access to ICU’s the donor status but there are other problems.

(1) Even if doctors have easier access to the database they will continue not to use it as it is “not informed consent.”

(2) To make it ‘informed consent’ it would require that the licence be updated on a regular basis. Drivers would not pay for a new licence annually.

(3) If it was left as an ‘indication of consent’ as it is now, then we have defeated the whole purpose of the review, as doctors will continue to ask families as no one will actually know the current wishes of the potential donor. Then we are still left with 6/10 families saying no.

(4) The sign up rate would not be as good as a stand alone register, as it would still require people to sign when applying for a licence. There would be no pre-conditioning. Giving a pamphlet explaining organ donation before signing up would not be enough to be deemed ‘informed consent.’

(5) Having the donor question come up at the time of being present at an LTSA Centre means that the person is not in a position to discuss the pros and cons with family members.

(6) Will they be able to specify which organs they want to donate? The current yes/no system discourages those who are happy to donate some organs but not all.

If we are to leave it on the driving licence. Just adding one more question prior to the current question of “do you want to be a donor yes/no.” would probably double the amount of people who put donor on their licence.

Before that question put the question: “If you needed organs in order to live, would you accept them?” followed with the “Do you wish to be a donor….?”

A Stand Alone Register

I have been reminded several times that, “We tried a register in the ‘80’s and it didn’t work.”

Well things have moved on since then!

The problems of the previous attempt were mostly due to data entry and cost.

(1) An online register (As used by many other countries) means there is little data entry as the customer does all the data entry themselves.

(2) It is secure, similar to online banking.

(3) Families could join up together at home in front of a computer. In the comfort of their own home, they could discuss it together and read the pros/cons and read the FAQ’s there and then.

(4) They would be able to specify which organs they want to donate.

(5) They would be able to update their status as often as they like online.

(6) Automated reminders could be sent at specified periods for people to update their consent.

(7) A log could be attached to their file showing the last date that they updated their consent.

(8) Registrations could be advertised, encouraged and inputted at multiple agencies (I.e. Chemist, LTSA, doctors, anywhere really. Not so easy to do with the driving licence (excludes drivers) and is administered by the LTSA and not the MOH.

(9) Would be updateable from anywhere in the world from a PC. Highly unlikely that this would be achievable through the driving licence being administered by a different agency without law changes?

(10) Next of kin details could be included on the online form.

Cost

Cost of a register has also often been cited as a barrier.

A couple of points.

(1) What is the cost of establishing a new register?

(2) What would be the cost difference between a new register and revamping the driving licence?

(3) I would have thought that cost is low. It is only a database after all?

(4) I have been approached by a large company offering a free database. They already have a similar database in use and would be cheap to alter it.

(5) Buy an existing organ donor database? With so many out there around the world I am sure various countries who have already invested in databases would like to recoup some of their costs by selling a blank template database.

(6) Likewise Web companies that have already developed these databases for use by organ donor agencies may sell at a cut price being as they already have the templates?

Other Options

Consider an opt-out system?

(1) A register of 4% of those who don’t want to be a donor are easier to track than the other 96%

(2) Wales adopted an opt-out system only 7 months ago and are already seeing increases on their donor numbers. “Dozens of Lives Saved Under New Organ Donation System”

(3) I do not think it worthwhile quoting figures of countries from pre opt out to post opt out as I am sure you have already looked into this. Though one example: Organ donation rates in Belgium increased by 183% after three years of the introduction of the Opt out laws. Only two percent of the population in Belgium has chosen to opt out

(4) Review the submissions of the last time a register was put to a select committee. Jackie Blue MP Private Members Bill in 2006. In fact MP’s on that Select Committee believe the Bill would have passed if it had not been read in tandem with the Human Tissue Bill. Even better, recommend that the Bill is revived.

(5) The Health Select Committee report into my 2002 petition to Parliament suggested we should look into an opt out register in the future.

Incentive?

Funeral Grant?

Why not offer a funeral grant to donors’ families?

More people would sign up as a donor if they thought it would take the financial pressure off their family at an already traumatic time. Or offer tax credits.

The government currently pays out over 3 million dollars a year in funeral grants to other less deserving cases. The very people, who save the health system money, contribute to the community, save up to 10 other peoples lives, and who are the real heroes of society get nothing...

Offering a funeral grant is not money for organs - it is recognition of their gift to society. The deceased does not benefit financially and neither does the family as it would be produced by redeemable funerals services vouchers only.

Donor Priority?

Since 2008, signing an organ donor card in Israel has provided a potential medical benefit to the signer. If two patients require an organ donation and have the same medical need, preference will be given to the one that had signed an organ
donation card. This policy was nicknamed "dont give, don't get". Organ donation in Israel increased after 2008.

Andy Tookey
4 July 2016